Table 1.

Structure and explanation of surveyed questions.

(x) General assessment of important social topics

(A) Knowledge about ATMPs prior to survey

1. Did you hear about ATMPs prior to your participation in the survey?

This question had an introductory purpose to assess the level of knowledge prior to participation in the survey.

2. Did you notice a recent trend of ever increasing number of approved ATMPs and ATMPs in clinical trials?

Research with ATMPs has been around for many decades, but a real awakening has only occurred in recent years with the introduction of very effective ATMPs to the market. Professionals in the field have observed this trend, but we were interested to see whether the general public also observed this re-emergence.

3. Have you heard about private clinics that offer non-approved ATMPs to patients?

The phenomenon of private clinics offering unapproved therapies is not new or unique to the field of ATMP, but professionals in the field have noticed a trend of increasing number of clinics offering non-approved ATMPs and we were interested to see whether this trend caught the attention of the general public.

4. What do you consider to be an appropriate measure to prevent private clinics from administering non-approved ATMPs to patients?

Here, we aimed at getting the public's opinion whether this phenomenon should be fought, if at all, with hard measures such as tight enforcement of the law or softer measures such as a warning from the media.

(B) Opinions on public funding in healthcare

1. Please rate on a scale of 1–5 the following topics: healthcare, climate friendly energy supply, data protection/privacy, migration, safe food, IT-infrastructure, safety and security, environmentally-friendly mobility, sustainable use of natural resources and defense.

Here, we aimed at identifying the public's perception on the importance of healthcare, compared to other important societal topics, where R&D is often also publicly funded.

2. Do you think EU- and state-funding should be invested in the development of future medical innovations?

The question did not pertain specifically to ATMPs but to medical innovations in general. The question served as an introduction to the following question as it helps identify and illustrate how the opinion of the survey participant changes from general medical innovations to ATMPs.

3. Should EU and Member States fund enabling technologies for cell and gene therapies?

We asked about public's support of funding of R&D in technology and material related to ATMPs. This is important, as it helps to identify what medical innovations EU citizens are interested in and how future government budget should be allocated. It also helps to identify whether education and awareness raising activities are required.

(C) Opinions on reimbursement of ATMPs

1. Should the state pay for expensive therapies although evidence for long-term benefit has not been shown yet?

Here, it was important to us to ask a balanced question by giving an accurate description of current scientific facts. To achieve that, we explained and emphasized the lack of long-term efficacy data for currently available ATMPs.

2. Do you agree that, in the case of rare diseases, cross-border health care (e.g., traveling abroad) is the best way to provide the most beneficial treatment for patients?

ATMPs are complex products that can often only be administered by specialists in dedicated treatment centers. For rare diseases, the number of patients is often low and it is not possible to open dedicated treatment centers in every region or country. Statutory coverage of cross-border healthcare would mean the taxpayer funds treatments given in another European country. We aimed to find out if European citizen support this reimbursement concept.

3. Should non-medical costs be covered in cross-border healthcare?

This question pertained to one of the big hurdles in reimbursement of cross-border healthcare: If medical treatment is administered abroad, non-medical costs (such as cost of travel and accommodation) are not usually covered by health insurers. We were interested in knowing the public's opinion on the possibility of reimbursing non-medical costs, by law, in case of cross-border treatment.